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Study Points to More Effective Treatment than IV Infusions for Low Blood Volume in OI, POTS

Just in the nick of time, we finish October with a post for Dysautonomia Awareness Month! Back in March of 2016, the Zebra Pit published a post about an upcoming study of oral rehydration salts (ORS) as an effective therapy for dystautonomia. The study was finally completed and published in July of 2019, in The Journal of Pediatrics. Learn about the results of the study, how it was conducted and what it said about the use of ORS versus that of saline infusions.

What is ORS?

Oral rehydration salts (ORS) are a mixture of glucose, potassium, and sodium. ORS was developed by the World Health Organization in the 1940’s to use as an oral rehydration therapy, in place of IV administration. When mixed with water, ORS has been proven to be effective to replace necessary electrolytes that have been lost to acute diarrhea or vomiting caused by diseases such as cholera. ORS is an essential medicine of the WHO, and has saved countless of lives that would have otherwise been lost.

Study Findings

In recent years, studies are starting to show that ORS can also be used as a short term treatment for those with Orthostatic Intolerance due to dysautonomia as well. The study sought to understand the efficacy of ORS and IV saline and whether it could increase blood volume, thereby reducing the effects of OI in the short term. In 2016, the NIH announced it was funding the study conducted by Dr. Marvin Medow, concerning the benefits of ORS with ME/CFS patients who have OI.

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Dr Medow tested a total of 35 people with OI and ME/CFS between the ages of 15 to 29. A portion were given placebo, while others received either a litre of saline intravenously, or an oral dose of ORS. After administration, the patients were placed in a lying position, with the lower half of their bodies covered in an airtight chamber,also known as an LBNP tank. The patients were then subjected to varying negative pressure. The pressure was gradually increased until each patient reached particular levels of OI. The testing was grueling: Most of the patients passed out at some point. My heart goes out to these patients and their bravery, but it seems their hard work has paid off. Not only did they prove both IV and oral rehydration salts to be quite effective in treating OI, but they figured out that one is actually more effective than the other:

Changes in normalized orthostatic index (% of that measured without treatment in control (black bars) and subjects with POTS with orthostatic intolerance (gray bars) measured following no treatment (Untreated), after infusion of IV saline, and after ingestion of ORS. Neither saline nor ORS increased orthostatic tolerance in untreated controls (P = .46; n = 15), whereas both IV saline and ORS significantly improved orthostatic tolerance (*P < .05 and **P < .001, respectively; n = 10) in subjects with POTS.” Dr. Medow, et al.

The study revealed that both saline and ORS are effective in the short term treatment of OI. However, the ORS, with it’s combination of sugars, potassium and sodium, was proven to be even more effective than the saline. While simple sodium can help raise blood volume, ORS still seems to be the better option, according to this study. Better yet, ORS is readily available, as well as affordable and it doesn’t require a visit to an infusion center or the use of ports and is obviously much less invasive, providing fewer risks than any venipuncture.

These concerns were what led Michelle to conduct her own study of the use of ORS to improve her POTS symptoms. Michelle has been taking ORS to treat her Orthostatic Intolerance (OI) for nearly three years. It’s proven to us that it can be quite effective and has been a staple in our household for a few years now! I even take it to help keep my own low blood pressure from becoming a problem.

ORS Caveats

Before jumping on the ORS bandwagon, it’s important to note that there are also some potential drawbacks to its use long-term that weren’t addressed in the short term study. Potassium is a very important substance for heart health, and it’s quite possibly part of the reason why ORS is more effective than IV saline, along with the glucose that it contains. However, potassium is something that needs to maintained within a certain range, as too much potassium can also have terrible side effects and fatal consequences.

High potassium levels in the blood can cause kidney failure, type 1 diabetes, Addison’s disease, or heart failure. Before starting any regiment of ORS you should consult with your doctor about whether or not this therapy is right for you and conduct preliminary testing, in addition to doing occasional spot checks to ensure your levels remain within a healthy range.

How often you need to supplement with ORS will largely depend on the individual and may take a bit of trial and error. Intermittent testing can help you get to the right level. For Michelle, who gets more potassium in her diet, it takes a lot more sodium than potassium, so she only supplements 1-2 x per week with ORS, while drinking water infused with sea salt and a small amount of glucose daily.

Some people may also have a hard time adjusting to the taste of ORS. Lucky for them, there are oral rehydration salts that also come flavored. Either way, you get used to the flavor and really come to appreciate the effects. In the end, Michelle decided learning to get used to salty beverages is by far preferable to higher risk, more expensive IV saline.

Where to Find ORS

Oral Rehydration Salts are easy to find, but not with the correct amounts of sodium, potassium and glucose. They also tend to focus more on flavor than quality and are not true WHO approved brands. Trioral brand is the only one I’ve found that is WHO approved and is conveniently available on Amazon:

Don’t need the potassium? Try putting up to a 1/2 teaspoon of natural sea salt into your water several times a day and add a little sweetener, which helps the body to absorb sodium. If you supplement with salt alone, you want to make sure it’s natural and not iodized table salt. You’ll also find you run through it quickly, so it’s good to buy in bulk. We like these brands and types:

No matter how you choose to supplement, it’s important for people with dysautonomia to get enough salt, glucose and potassium. As the highlighted study shows, it can have a huge impact on blood pressure levels, which means fewer dizzy spells on standing, less fatigue and improved symptoms over all. Sometimes medications are also needed to help manage this complex condition, but the first line of defense should also include these important electrolytes, which should be monitored periodically through testing. Remember, any and all changes to your healthcare regimen should be discussed with your care team first.

Do you already supplement with ORS or a similar product? What are some of the benefits you’ve found?

Resources and Further Reading

David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.

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How Sound Machines Help Me Sleep Despite Chronic Insomnia

Please note this post contains affiliate links. Thank you.


Missing those days when you slept like a baby in warm, loving arms? As a spoonie, sleep is one of the most elusive things I experience, sometimes failing to arrive in time for bed or fleeting rapidly in the smallest hours of the night. For those of us with dysautonomia, such as POTS or NMH, or chronic anxiety or PTSD, can easily get stuck in flight or fight made, keeping our brains from being able to calm down and fall into a deep sleep.

Sound machines can help to calm the central nervous system and block out noises that trigger the fight or flight response for no reason. Find out how this can provide a much better night's sleep or even narrow the distractions you experience through the work day at zebrapit.com. Includes a review of the one I use to ensure I get a good night's sleep.

Its much the same for conditions like MCAS and allergy that dump anxiety fueling chemicals into our blood such as cortisol. In these situations, sleep can be a desperate thing. At times, feeling as elusive and unreal as a flying hippo. Some of us even fail to reach REM stage sleep, a situation I was caught in off and on for some years.

You might be surprised to find how much a simple machine that only takes up a few inches of real estate on your nightstand, can help combat some of the issues we experience with sleep. I certainly was. A sound machine helps to aid in sleep by keeping noisy distractions to a minimum and helping our central nervous system to relax.

Do you use a sound machine? When you first began using it, what are some of the first things you noticed? Perhaps you had a harder time sleeping with it at first, or at least getting there, but once used to it, how did it change your sleep? For me, it started by waking less in the middle of the night and I started feeling more refreshed in the morning.

My husband has used white noise to sleep since long before I met him. His version of white noise was to turn a fan on high every night and we quickly found that while he was often too warm, I was turning into a human Popsicle nightly. In order to save the relationship, we sought our solution through the use of sound machines.

The Benefits of Sound Machines

Eventually, I came to need the sound, too, though originally I thought the idea seemed silly and down right unsafe. I’d spent my life with PTSD and lived with the people who gave it to me. There was no place safe for me and often sleep would only come visit me in the classroom. If I didn’t think I could hear well enough in my surroundings, it’s always heightened my anxiety.

With the Uzopie Sleeping Sound machine, you'll be sleeping like a baby in her mother's arms. With the use of white noise to block out distractions and calm the central nervous system, it's easy to understand why sound machines helps so much with the insomnia that accompanies so many chronic illnesses, including MCAS, POTS, NMH, PTSD, chronic anxiety and many others.

While my husband had to have noise, it made me very uncomfortable at first and I didn’t sleep well. I became used to it after a while and stopped giving it any thought. I came to understand that the noise it cuts out is extraneous background noises that don’t hold any sort of imminent threat. I would still wake up to sounds of an intruder or even just the cats crying for breakfast. What it cuts down on are the noises of neighbors walking and talking overhead, the rumble of cars going past, dogs barking and the whistle of far off trains. Those things are certainly not threats in my bedroom, but sometimes an anxiety-filled brain can no longer prioritize threat levels accurately. It also makes the sound of my husband’s snore fade into the background pretty well until he lands on his back for an all out symphony.

I realized eventually I couldn’t live without it and how much it helped to block out all of this distracting noise that tends to keep my mind on high alert and constantly searching for danger. It was exactly what I needed to relax more deeply into sleep. Only I wasn’t quite utilizing the noise machine right. A fact I didn’t understand until we moved the sound machine over to my nightstand to save him some space.

I couldn’t believe the difference. I slept so much better when it was right by my head. I knew he was never getting it back. When David started complaining that he wasn’t sleeping well for some reason, I immediately understood it was because the sound had gotten too far away and dim for him. We had to have two; one on each nightstand, nice and close to our heads.

We bought a second one we like much better than our old one and we now each have one on our nightstand. During our vacation and on July 4th, it got the real test. We live a real rock `n roll lifestyle of chronic illness and early work hours regardless of things like holidays. We both have dysautonomia on top of my PTSD and his ADHD. Sleep doesn’t come easy for either of us and we have startle responses like an early 1990’s car alarm; loud, inaccurate and possessing a hair trigger.

Despite it all, we went to bed at 9 PM on Independence Day and our sound machines blocked the neighborhood and city fireworks so well I slept through them! Now I’m turning mine up even more, trying to make sure I’ve got maximum coverage. Maybe my neighbors upstairs will even cease to exist! They have feet 👣👣 but I’m pretty sure they change to hooves behind closed doors. Damned devils! 👹😂

According to Karen Asp on Everyday Health, there are a number of ways sound machines can help people:

In a study published in June 2016 in the Journal of Caring Sciences, individuals reported sleeping better while using a noise machine in a hospital setting (complete with various background noises you might expect to hear overnight in a hospital) compared with hospital patients who didn’t use one.

These machines also work well for people with tinnitus, or ringing in the ears, which is why they are the first treatment option Dr. Brodner offers patients with this condition. “During the day when there’s other noise and stimuli around them, they don’t notice the ringing,” he says. “Yet because there’s no background noise at night, the ringing bothers them, and those machines can help drown it out so they can sleep.”

Can a Sound Machines Actually Help Me Sleep Better?
There are many benefits of using a sound machine, such as those listed. I've also found they are useful for much more than just sleep, but be sure you're using them correctly to get the maximum benefits. Learn more now by clicking through to my post, which includes a review of a very affordable sound machine that will have you resting easier in no time despite dysautonomia, POTS, anxiety, PTSD, tinnitus and sensory overload.

So far, our new sound machine works great, never failing to do its job whether at home or on vacation. It’s also a very easy electronic device to operate, with the dials and settings on top, where they are easy to see and reach. The push-button style on/off switch is easy to locate. Twirl the volume button to turn it up or down, or push on it to change your sound selection. No need to select a sound nightly, either. The machine will automatically play based on the last setting, unless the electricity gets interrupted. This makes it a breeze to operate on groggy mornings or bleary eyed nights.

I also tested it in the living room. It seems to help with my sensory overload and helps me to concentrate when working to cut out all the neighborly noise. Some of the best bucks I ever dropped, and since it’s so affordable, I didn’t feel bad for splurging on a second machine.

Sound Machines for Work? Yes!

Sound machines aren’t only good for sleeping and relaxation when you have dysautonomia, PTSD or anxiety. They can also help keep your mind on task when working at home or in the office and can provide greater relaxation in other areas of your home. We recently moved from a rural area to a much more populated one and I’m finding that using a sound machine during the day tunes out most of the distracting noises of high traffic, emergency vehicles, dogs, the neighbor’s quarreling or the screams and giggles of children playing, which frankly can be like nails on a chalkboard due to my sound sensitivity and sensory overload.

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And while it seems like it could mess with your sensory overload, it actually has the opposite effect for me. I find it very calming. It provides a comforting noise that is consistent and allows me to tune out the distractions, so I find it to be a useful tool for both sensory overload and retaining my focus. No need for uncomfortable headphones or ear plugs to drown out the noise.

The Uzopi Portable Sleep Sound Machine.

Uzopi Portable Sleep Sound Machine

I chose this model myself, as I liked the compact design and easy functionality. In addition to what I’ve already spoken about, here are some other great features that come with this sound machine:

  • The 9 sound settings (White Noise, Campfire, Wave, Brook,Rain, Thunder Rain, Cricket, Forest, and Lullaby) create a soothing environment that promotes sleep, relaxation, and concentration.
  • Setting the sleep timer will automatically turn off the device after 15, 30, 60, or 120 minutes.
  • The compact design easily slips into any suitcase or backpack. You rarely miss a night of sleep, even on the go!
  • The volume is plenty loud and easy to adjust so you can filter out just the right amount of noise to suit your needs.
  • Provides clear, consistent sound without annoying burps, clicks or poorly looped tracks to distract your mind.

Of course, one of the loveliest things about this model is that you get all of these benefits for a very economical price! Buy it now on Amazon: Uzopi Portable Sleeping Sound Machine or your preferred retailer. By purchasing through the link, you are helping the Zebra Pit to meet operating costs and continue publishing and yet it doesn’t increase the price for you.

So what are some other things you do to try and ensure a good night’s sleep? We’d love to hear about them in the comments! As always, thanks for reading. I hope this post has helped reacquaint you with your old pal, Sleep!

Further Reading and Resources:

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Dysautonomia and Achieving a Better Quality of Life Through Exercise – The Unchargeables

Written by Capricious Lestrange for The Unchargeables October 2, 2018 and reprinted with permission. The original can be found here: Dysautonomia and Achieving a Better Quality of Life Through Exercise – The Unchargeables


Did you know that regular exercise can actually improve the symptoms and quality of life for POTS patients more effectively than a beta blocker? While doctors often reach for the prescription pad to cure our healthcare issues, diet and exercise are often key players in health issues, and dysautonomia is no exception. For many, a combination of medications, along with changes in diet and exercise is the answer to achieving their best health with the many conditions that fall under the dysautonomia umbrella. Exercise is an integral part of that equation. I didn’t see significant improvement in my own Postural Orthostatic Tachycardia Syndrome (POTS) until I began to incorporate exercise into my daily routine.

The Supporting Evidence

When beta blockers were compared to exercise over a three month trial, it was found that while both decreased heart rate, the medication did little to make patients feel any better, while exercise impacted the overall quality of life for patients. “The exercise worked better than the medicine to restore upright blood circulation, improve kidney function and quality of life, all problems in POTS, the researchers say (Exercise).”

Of course one doesn’t just start doing jumping jacks or running track with dysautonomia. The first thing you want to do is speak with your doctor and get cleared for exercise. Your doctor can also help you choose a healthy target heart rate and ranges for cardio exercise. It may also be a good idea to work with a physical therapist to help you decide what level of exercise to begin with and what’s safest for you. Dysautonomia International suggests that some patients may even benefit from a cardiac rehabilitation program.

Modifying Exercise for Dysautonomia

How much energy we expend can be just as important as the type of exercise. In fact, exercise intolerance in dysautonomia is very real and many of its accompanying primary or comorbid conditions like MCAS or ME/CFS. Exercise intolerance means that an increase in activity can cause an increase in symptoms for an illness, most notably fatigue levels. Where the confusion comes in with this concept is that people assume that any exercise becomes problematic for someone with these conditions and that’s simply not true. What it does mean is that we have a lower threshold of tolerance than healthy people and we need to modify how we exercise.

20CEF342-4CF5-40EF-9447-3D5B31F3DA97-300x300For people with dysautonomia, this means avoiding exercise in an upright posture along with monitoring how much energy we expend. The first part of this equation is pretty easy to understand; we want to partake in exercise that can be done from a sitting or laying down position, such as recumbent biking, rowing, or swimming for our cardio. If we lift, we want to do so in a sitting position. Things like dance classes and barre should probably be eschewed for spin class, pilates, and yoga, while still avoiding certain positions. It’s all about being safe and not giving our intolerance to standing the opportunity to rear its ugly head.

Pacing for exercise intolerance is a bit trickier. No one can tell you where that wall is for you and the best thing is not to find it, but to strenuously avoid finding it, as it can take several days to recover from triggering your exercise intolerance. We all know what it is, because it’s that feeling that usually makes us say “Oh no! I think I overdid it!” as we feel the state of our health crumble like a cheap facade. But how to avoid it?

8 Tips for Pacing Yourself

  1. Forget the no pain no gain bull. That’s not for spoonies.
  2. Count exercise in your spoons. Your exercise is part of your health care and necessary to staying/becoming healthier. It should come first, but if you have something else to do in a day that’s going to take more spoons than you have, exchange it with your exercise to avoid triggering your intolerance.
  3. Start out at the appropriate level of exercise. Avoid straining your muscles. You DO NOT need to strain your muscles to build them.
  4. Do an appropriate number of reps. Even if it’s only 1 set of 10 or 3 sets of 5, you’re still getting the work in. Good for you!
  5. If you wake up already fatigued, hydrate and supplement with salt. Take a break or decrease the number of reps if rehydration doesn’t help.
  6. Keep in mind that upright exercise will always cost you more spoons, so if you exchange your 3 mile recumbent bike ride for a trip to a park to walk 2 miles, the walk to the park is going to cost more spoons.
  7. Keep a journal of your exercise to ensure you’re gradually increasing your exercise and offering yourself enough challenge without regularly triggering your exercise intolerance.
  8. Try not to take breaks longer than 1-2 days. Decrease workouts rather than cut them completely to avoid losing ground.

Since I was bedridden when I started out, I had to start out very slowly, using simple exercises that can be done in bed. I wasn’t just fighting exercise intolerance, I was fighting serious muscle deconditioning, which can contribute to the severity of dysautonomia and the level of exercise intolerance you may experience. The last thing you want to do when starting a new exercise program is trigger exercise intolerance. You want to start out gently, doing exercises you’re confident you can do at a number you’re sure won’t make you sore or wear you out.

Find a Physical Therapist to Help You

While I did this rehabilitation alone, it is probably better to go through an approved therapy program that’s arranged by the doctor caring for your dysautonomia. You really need someone who can direct your practice and ensure you’re not only performing exercise that’s safe for your condition(s), but also appropriate for your starting level of fitness to avoid any injury. While I’ve always been a bit of a do-it-yourselfer, I say this because ultimately I ended up in therapy later, attempting to correct all the weakness that remained because I was either not doing exercise to target those specific areas or I was doing them incorrectly and hurt myself. I could have saved myself months of pain and hassle had I just gone and requested the therapy in the first place.

It may be frustrating to start out so slow and you may be bored, but don’t worry. You’ll be amazed with how quickly your stamina increases and soon you’ll be able to take on more. The great thing about working within our own limitations is that those limitations become less constraining quite quickly. Before you know it, 10 minutes will become 15, 15 will become 20 and before you know it, you’ll be devoting a whole hour to ninety minutes a day exercising. Even if you can only last 5 minutes to start, you’re getting somewhere. But you can only get somewhere if you keep going.

No matter what level you’re starting at, it may be possible to work your way up to unmodified, upright exercise. This can be largely dependent on comorbid factors, but dysautonomia is not an incurable condition for everyone and while well controlled, some of us with it can lead almost normal lives, which includes normal exercise. For example, by the end of the previously mentioned study on exercise versus beta blockers, 10 participants could no longer be diagnosed with POTS at the end of the three month trial (Exercise).

Every Patient is Different

As someone with POTS as a secondary diagnosis to EDS and MCAS, I may always rely largely on my recumbent stationary bike for my cardio. However, I’m also able to incorporate occasional upright exercise as well, such as walking at parks, stair climbing, and light aerobic exercise. Not too shabby for a former occasional wheelchair user. Actually, it’s been over a year since I’ve pulled my wheelchair out for any reason, even attending museums, festivals, concerts, sporting events, malls and parks with nothing but my own two legs to carry me.

Like many, I use a combination of meds, exercise and diet to manage my dysautonomia. I enjoy fewer symptoms, greater stability of health and more freedom overall because I’m no longer worried about passing out in public every time I leave the house. Finally, exercise is a great way to feel more in control of my illnesses and in touch with my own body again.

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The Year I Wanted to Die

dms7ubovaaafrbuIt’s World Suicide Prevention Day. I’m not going to pretend that I have all the answers or that I can provide some sort of step by step guide of what you should do if you’re feeling suicidal. There are a million of those out there and I don’t know how useful they are, to be perfectly and perhaps shockingly frank. What I can do is share the story of the year I struggled regularly with suicidal ideations, made a plan right down to the method of my suicide, planning my own funeral arrangements, and a manual on how to take care of everything I would be leaving him to deal with after my death. Hopefully I’ll also be able to shed a little light on how I survived it and why I’m thankful everyday that I’m here to live another day instead of carrying out those plans.

It was 2013. I struggled almost daily with suicidal thoughts for around a year. I had just severed my relationships with my remaining family for their lack of support and understanding about my illnesses. I had been forced to give up work, my health The continued to spiral and no one could tell me what was wrong with me. I suffered daily with migraines, severe brain fog and any number of odd symptoms that had me barely functioning. I kept running life threatening infections.  I was forced to give up all of my pets because I could no longer care for them and we were living in a pit of a mobile home where I was convinced we were going to freeze to death if we were forced to live there one more winter and it felt like it was my fault.  We were in the process of filing for bankruptcy, my husband had given up his job to take care of me and was then forced to work at a convenience store 50 hours a week on second shift and was never around after the money ran out. By this time, most of my friends had already abandoned me and I felt completely hopeless. I didn’t know if I was dying or if I was meant to linger on in agony for decades, but I knew I couldn’t face the possibility of the latter, and felt like I was running out of options. Suicide began to feel like the only way out.

On top of that, everything going on with my family and my health had started me into a cycle of nightmares and PTSD flashbacks that I could rarely escape. I’ve never been properly tested, but I’m pretty sure I have androgenic POTS, meaning that when I have an episode or flare up, I get epinephrine and adrenaline dumped into my system. This puts me into a panic attack every time, triggering PTSD episodes. It also caused terrible insomnia, in addition to the painsomnia I was often fighting.  Sleep was very rare and precious indeed, but to have to deal with repeated scenes of childhood abuse, bullying and rape, it just completely broke me. Tactics I’d used earlier in life to control my PTSD episodes no longer had any effect, because the triggers were now chemical and I had no control.

I started to squirrel away the money to buy a gun (even though I couldn’t even afford my medications) and settle my affairs, writing up instructions on what to do upon my passing for my husband, since I’ve always been the one to take care of the household affairs. I had no tears left for myself or anyone else. I was truly convinced I, and everyone who ever knew me, would be better off if I were dead. I was consumed by my uselessness, obsessed with the fact that I could no longer work and that my value was tied entirely to that, having been rejected for every other reason a person could have value. I could no longer create poetry or short stories. My brain didn’t work that way anymore. I couldn’t conceive a child because of PCOS or endometriosis or my health or the perfect storm of all those reasons, no one really knew. I couldn’t even care for myself properly. What good could I possibly be to the world? I couldn’t even be a proper wife or friend.

I wasn’t exactly rational at the time. I was still writing poetry, not to publish, but to try to funnel some of the rage and desperation I felt. As you can tell from the poems, written over the entire year, I was stuck on revenge and suicide fantasies both, which combined to create some pretty wacky, morbid, startling scenarios. The parts I relished the most (the discovery of my body) are often the parts I left out, because the truth is the family members whose living rooms and private spaces I chose in which to off myself are all people who would be more bothered by the mess I left than me dying, and I’m just not that good at lying to myself.  I had no intention on acting on any of the things in these poems. They were an outlet, a way to get the emotion behind the actions out in a safe and completely private way.

***

Holding on and Letting go

With the first signs of trouble, you drifted in with the high tide on your brightly colored boogie boards, left me drowning in ocean swill of sickness, anger, self loathing. You mistook my S-O-S for ransom note, deemed the price too dear. Now I tread these dangerous waters alone, no raft to rest my weary bones. How much easier it seemed on the other side, this letting go. If only I a bullet for my rusty gun.

***

Poetic Death

Head in the oven, like Sylvia Plath? Poets, both though she far cleverer than I. To simply fall asleep and never wake sounds so sweet, so traitorous a lie. Come Sylvia, lie beside me, read me charmed lines predicting our deaths; you and I and sweet misery staining our cheeks. Until we sleep our poetic deaths.

***

Death’s Thesis Statement

I don’t want to die weak like a “woman,” pills piled in the back of my throat, the sweet lustful sally of unconsciousness. No, I want to go out with a bang. Not in the heart; a bullet through the brain, bright blast of crimson spray from the back of the head, visceral paint on a pristine wall. I want the violence of it all. Perfect punctuation for this life’s sentence.

***

Beauty on a Trailer Park Lawn

Ice falls from the stars, crystalline tears captured in monument. Emerald green refracts beneath their surface here, pallor of death twinkling just around the stairs, where once a lawn mower was kept. We dance upon the ice, death and I, knowing the danger. The tinkling of sweeping ice our music, the time we are keeping. The bones, lovely flesh, they are weeping. A crimson fountain completes the scene. We freeze lockstep. I always wanted to be statuesque.

***

If I Die as You Died, Will I Join You?

The Ohio has frozen and my car wants to go skating upon the ice like a dancer, careening and curving until the great water takes her, defeating the ice like a great barge cutting through with its hull. Thirty-two degrees and I won’t struggle long, feel the pain flag and wane, the ice penetrate skin, bone and vein. I never wanted a coffin, but if have one I must, the car that took me 150,000 miles will do me just.

***

Recoil

I could steal into his home. Break a lock and load a gun. Sit in his favorite comfy chair, pour a Jameson’s or have a beer. I could roll a joint or toke a bowl, peruse a mag or ogle some porn. When I’ve had my fill, I’ll raise his revolver to my ear. I always told him guns in the home were dangerous.

***

Self-Portrait

For you, I would paint a picture in blood. A Picasso representation of me and you would know exactly what it means because you are me, raw in your pain, victim to your disease. I would die by inches, from a million cuts made in the construction of this picture and your house would be bathed in the blood of the million cuts, the million times you have cut me with your rejection. You would decipher the layers of my blood on the canvas of your wall, the faint shades from wrist, the dark heavy heart blood, feel the years of silence in the curve and weft of each stroke, intuit the retribution paid for leaving you, for saying I do and not really meaning ‘for sickness and in health,’ for going when the going got too tough. Your wife would view it as a murder scene, my body a trophy left at your long slender toes by an admirer; you in the role of Jodie Foster. She wouldn’t be wrong, but she wouldn’t be right, either. I wanted you to care. I wanted you to love me, if from a distance. I wanted you to say that what we once were together as one meant I still mattered to you apart, if in only some small way; a phone call once a year, the occasional text message, an email. I wanted to die somewhere other than the tiny trailer where my husband still has to live. I wanted someone other than him to mourn me. Remember me. Remember me then. Remember me now. Remember who I became, this warped image of who I am; because in all my perversion, I still count.

Damn you all. I still count.

***

Weekend at Daddies

(A dark comedy starring Capricious Lestrange)

After the deed is done, they’ll prop me before the TV, happy not to listen to the nonsensical chatter I picked up from my unfortunate edu-ma-cation, the awkward questions about their health or retirement or politic or Cherokee grandmother, sliding in their not-too-subtle knife blades during the autopsy of my youth. They’ll insist on dragging my bloated body to the mini-van, buckling me in for a trip to Wally-world only to deny me purchase. This will be the grand trip, topped off with a meal at Sonny’s barbeque. Dad will polish off our buy one get one meals, napkin conveniently erasing all guilt. The remaining visit filled with home improvement projects; no time like a visit from the daughter he abandoned at four to replace the carpet on the bedroom floors.  ‘No, no. No need to help. I insist. No, ladies relax.’

***

Untitled I

Watch Facebook for your next vacation. Jump on a plane and catch a cab to the house I’ve only seen in pictures. Creep over crabgrass to the lanai and slip into the hot tub you disdained because it was not a pool. Think of how you left us to find you overdosed so many years ago and I am the last to even the score. Slit arms, thighs with straight razor in warm puckered fingers. Watch the foam turn red: The salute you and your state deserve.

***

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Tell me why I shouldn’t die, leave you behind to learn again the language of happiness. It’s not like I’m asking you to fly, perform an appendectomy, speak French. It wasn’t so very long ago we laughed beneath the sheets, the swaying trees, the winking gaze of an evening sky. Get on that bicycle, my love. Ride.

***

Of course if you have someone in your life you can turn to at the moment you’re dealing with these things, that’s best and of course I was doing plenty of talking with my husband at the time. Most articles on suicide prevention say that dwelling on these things is exactly the wrong strategy, and they might count these poems as just that, but if you’re an emotive person who needs to get these things out with nowhere to turn, writing might be a good option for you. I’m of the opinion that there’s just no one size fits all model.

I wasn’t able to find a counselor at the time. Money was at a premium. I wasn’t suicidal enough to want to be locked up and I can pretty much guarantee that locking me up would only make me more suicidal, not less. So I kept writing poems, kept journaling, kept reading articles on mental health and doing my best to begin researching about my own health to begin trying to figure out what was wrong with me so I could get some relief. I discovered dysautonomia and talked to my doctor. I got some ORS and medications and slowly but surely got more regular control over my POTS episodes and insomnia. I started taking antioxidants and herbal sleep aids and supplementing some of my vitamin and mineral deficiencies. Each thing helped just a little more until I found fasciablasting and more supplements and the proper diagnosis and got back to mostly being me and realizing that I could have a life that wasn’t plagued by constant pain and untenable symptoms. Then I came to the realization that I had to allow myself to accept and mourn all those things I had lost before I would ever truly be able to move on and forgive myself for becoming sick and letting myself down. Since that time, the progress with my mental health has been many more steps forward than those I take backward.

dmv8msmx0aurj4bI’m quite glad I battled those demons and won, as I rather like my life, multiple chronic illnesses and PTSD be damned. Yes, I still suffer some days, but I rarely ever experience the kind of suffering I once did. I finally found valid diagnoses and doctors and treatments that could help. We survived bankruptcy, we moved, we’ve welcomed a new pet into our lives and after 14 years together, we’re still very much in love. My mind works better than it has in years and my health continues to improve. I produce writing that I can be proud of again, including this blog, but even when I can’t, I have learned how to be okay with that and accept that it doesn’t make me less. I have much to live for as far as I’m concerned and no one else’s vote counts.

Even when you can’t see anything positive in your life, when all seems hopeless and change impossible, it’s simply because you don’t have the perspective necessary. You never know what it may take to change that perspective, but eventually perspective always shifts. Change is one of the laws of nature. Nothing can ever remain constant. We need only survive something for a finite period of time. If you’re struggling to maintain that hope, remember this. It may not seem like much. But sometimes it’s all we’ve got.

The Year I Wanted to Die Quote

 

 

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Preparing for Concerts and Events with MCAS

When deciding to attend my first concert since 2010 I was excited, but wary. Music has always been a fundamental part of my life and mental well being. Being disconnected from music while dealing with too many neurological symptoms to tolerate it was a special sort of hell for me. Even once I was well enough to tolerate listening to some music at home, live music seemed like an assault on the senses and something I would never be able to enjoy again. I knew from a couple of attempts at seeing local bands at outdoor events that this activity wiped me out like no other, even when I just sat and listened. When I began researching mast cell activation syndrome (MCAS), I came to understand this might be due to the way my mast cells were reacting to vibration, but I decided to take my chances anyway. Today, I want to share with you how that experience went, how I prepared for it and what I might do differently next time to help you get the most out of your concert experience.

I’ve been doing better than I have been in a long time and an outing of several hours where I can both sit and stand is certainly manageable despite having multiple disabling chronic illnesses. With the help of medical procedures, diet, exercise, supplementation and the medications I take, my fatigue levels are much lower and many of the symptoms that used to be a constant in my life; migraines, dizziness, weakness, vomiting, chronic pain and brain fog are mostly well controlled and only occasional visitors now.

Despite all of this improvement, I’m having a hard time controlling my MCAD reactions and symptoms (which I assume is probably MCAS since it fits well with my EDS and POTS dx, but I don’t begin testing until August 29 for diagnosis). I’ve had these problems for years, but in much smaller scale. That is until this spring when I began reacting as if I were allergic to almost everything in the known universe.

I’ve been on a mast cell mediator called quercetin for about 3 months now. The longer I take it, the more my symptoms improve. I still cannot leave my house without wearing a mask and my diet is very restrictive, but my reactions aren’t quite as severe. I no longer have to take Benadryl regularly, instead reserving it as the rescue med it should be unless I know I’m going to be exposed ahead of time. It seems like each week there’s a bit of improvement in how I feel overall and the amount of time it takes me to recover from exposures. Going to a concert on July 31 didn’t seem like that big of a risk. Luckily I turned out to be right, but I did still have a reaction and I’m at a loss to say it was caused by anything other than the vibration I experienced.

Concert Preparation

To prepare for the concert, I took benadryl, along with extra zyrtec, flonase and ketotifen eye drops. We got lucky and pollen counts were nil due to regional rainstorms so I didn’t have to wear my mask on the drive from Northern Kentucky to Indianapolis. I put my mask on as soon as we arrived at the venue, as I knew I would be exposed to a variety of colognes, body products and cleaning agents. Without a doubt, I made sure I was well protected. Since I was a little worried about the sound levels and getting a migraine, I took ear plugs. I wore them through the opening act (and frankly would have appreciated better ones to drown them out), but the theatre kept the sound levels at acceptable levels and I was able to remove them for the main attraction.

Since I still react to food so easily and can no longer process carbohydrates or fatty meats due to GP, we no longer attempt to eat out unless there’s absolutely no other choice and we never combine it with other activities if at all possible. The potential to ruin things with a bad meal is just too high. We ate an early dinner before leaving and I packed snacks from home, consisting only of things that I eat every day. Since I am a POTSie, I also packed Oral Rehydration Salts and dressed in layers, just in case I started having issues with blood pressure fluctuations and dizziness or difficulty regulating my temperature and made sure I was well hydrated.

MCASConcertPrepAs usual, I stocked my traveling pill case to ensure I had everything I needed; benadryl and asthma rescue meds, pain relievers and muscle relaxers, extra midodrine just in case the ORS isn’t enough, triptans for migraines and an antiemetic. I store all of these things, along with my ORS, mask, tissues, eye drops and nasal sprays in an over the shoulder purse or body bag that never leaves my person.

Even though it was a 2.5 hour drive and we knew the concert would go until 10 or 11, we opted not to stay overnight, because this simply presented too many complications for me at this point. I was worried about reacting to everything from the hotel linens to being able to get safe foods to eat. I stand by this decision, as I believe it helped me to keep my total exposure down to whatever got through my vogmask (which is very, very little) and the vibration I experienced from the loud music.

I’m sure 5 hours of driving contributed to my fatigue, but two 2.5 hour drives with a concert in between wasn’t overly taxing. We took a break going in each direction and made sure we stayed hydrated. It may seem strange, but I opted to drive on the way there. I feel better when I’m the driver in a car rather than the passenger. This doesn’t make sense when considering that mental exertion can be just as taxing to an EDS body as physical exertion, but I believe it works better for me because keeping my arms on the steering wheel actually helps me to maintain better posture than I would sitting in the driver’s seat playing on my cell phone or whatever. I always find myself uncomfortable, shifting to find a better position and putting my feet up on the dashboard, which sometimes hyper-extends my knees and hurts my ankles, even if it does assuage my POTSie symptoms. No matter how I try, I always come out of the passenger experience in more pain and fatigue than I do when driving.

We gave ourselves plenty of extra time to get there, both in case traffic was bad and so I didn’t feel stressed out about making it on time. As a trifecta zebra, stress will put me into a flare faster than almost anything. Feeling in control in the driver’s position with plenty of extra time really helps to dissipate those tensions.

Arriving at the Concert

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We got there about 45 minutes before the concert started and it was perfect. We were able to get good parking in a lot right across the street and we had plenty of time to gather our things and calm any butterflies. My husband and I both have anxiety about crowds these days, so we like to ease into these things. I took a dose of Benadryl just before going in and chugged down a little water to ensure I was well hydrated before snapping a couple of pics and heading inside.

I was distracted by the crowds and forgot to put on my mask until after we were already inside and I got a big whiff of cologne. I ran from the cloud and donned my mask. We got a drink and sat in our seats, getting acclimated to our surroundings and admired the beautiful old theatre. I put in my ear plugs and prepared for the opening act. We were both freezing and I was grateful for my shrug.

Everyone remained in their seats for the opening act, so I took the time to relax. Once Erasure came on stage, everyone stood up and I did, too. I was a little worried about spending too much time on my feet, but I felt pretty comfortable with it and wanted to see them perform. Erasure is a group I’d wanted to see since I was 15 years old and I fully intended to enjoy it. I removed one ear plug and was pleased to find that the music wasn’t overwhelming at all, so I stuck my ear plugs in my pocket. Soon my shrug came off, as I started moving to the music and sweating.

After a while, I was all out dancing. I felt great and I could hardly help myself. The energy was amazing and I really couldn’t have asked for a better concert to start with. I could tell all my exercising had really paid off. I felt strong and in control of my movements. Still, I was careful not to bounce on my feet or jump around for fear of jamming or dislocating something and ruining things.

We sat when we needed a break and rejoined the reveling when we were ready. I felt great and I think I actually spent more time on my feet than my husband did. I sang and shouted through my mask and laughed when people stared at me and my mask like I must be crazy. I didn’t care what anyone thought. It was my night and no one and nothing was going to ruin it. I cried for the joy of it all.

After the Concert

On the way home, I still felt great, though the fatigue was starting to catch up to me. I let my husband drive home so I could nurse my growing pain and eat something. We talked about the concert, listened to music and sang too loud all the way home. Neither of us suffered any hearing loss and we both felt pretty good.

I had a terrible time sleeping when we got home around 1 am and it was well past 4 in the morning before I could sleep. I woke after only 5 hours. I was sore and fatigued and starting to feel a bit like I’d been pummeled by all that beautiful music. By the afternoon my head was pounding with an all over mast cell headache. My back was bothering me a bit and my head itched terribly, but I didn’t pay it much attention until later that night when I went to scratch my back and felt three giant cysts growing there. I looked in the mirror and realized my entire back was covered in cysts and hives.  I took a double dose of Benadryl and my husband covered my back in hydrocortisone cream, which calmed things down fast.

853.jpegFor two days, I experienced a variety of symptoms, from nausea and diarrhea to a stuffy nose and eyes that wouldn’t quite focus right. My symptoms seemed to run the gamut and include every system of the body. My dysautonomia flared and I grew dizzy, anxious and bone-weary. I wasn’t sleeping well. My brain fog even increased, making it harder to concentrate or remember things, while my nerves lit up here and there, causing sharp shooting pains at random.

If you’d like to learn more about how mast cells react to vibration, this study on vibrational urticaria gives a great details and discusses the genetic origins for vibrational urticaria that isn’t a part of MCADs. This Wikihow does a nice job of breaking down ways to help treat a vibrational urticaria reaction, which for some, is a genetic disorder that’s not associated with MCAS. It proposes much of what I’ve written here, along with taking warm showers instead of hot, avoiding the use of soap, and using cold compresses in addition to oral meds and creams to calm hives and pumps that occur as a result.

Putting It into Perspective

Luckily, this little firework display of symptoms didn’t last long, nor did I have to continue taking the Benadryl for long. After 72 hours, I mostly felt like myself again. Had I attempted a concert back in April before I began to get things moving in the right direction concerning my mast cell issues, I have no doubt the payback would have been much worse. Perhaps in a year, assuming I have things under even better control, it’s possible that the payback will be even less. Even if that’s not true, so long as my baseline is somewhere in the neighborhood of where it is now, I would do it again with barely a hesitation.

My advice to anyone with the trifecta who wants to enjoy loud events is to consider not only what kind of payback you might anticipate, but also what the experience itself will do for you. As zebras and spoonies are so often denied so many experiences because of our vast limitations, sometimes we just have to say fuck it and pay the consequences so we can soak up the joy until it all comes crashing down. Of course, there are smart ways to do it and then there are those ways which will put us down for weeks. Had I not prepared well, had I decided to eat out, to leave my mask behind or get that hotel room, I’d probably be writing a very different article. DO the things you love most, but find ways to do them that work better for you. Pick the periods when you’re doing particularly well. Prepare. Keep your exposures to an absolute minimum. Take notes for the next attempt. They may still turn out to be hard on you, but you could take the recovery time from weeks to just days.

I can compare this experience to going to a Bengals game just a couple of years back. I attended that game in a wheelchair trying to cut down on payback. It took me weeks to recover and I held on for dear life just to get through it; not the most enjoyable of experiences. I had prepared, but I wasn’t treating my MCAS (if anything I was in denial about having it), I ate at the stadium, and I had no idea that vibration was affecting me this way. If I had a skin reaction after that game I don’t remember, but I certainly wouldn’t have connected it with the vibration of stomping, screaming fans and the loud speakers placed throughout the facility blaring music and announcements.

Finally, If you haven’t been diagnosed with MCAS, but this all sounds familiar to you, get tested. Don’t wait until you’re in a state of constant reaction like I did. There are many things that can substantially improve MCADs and the earlier the intervention, the better the outcomes.

Preparing for Concerts and Events
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